New to LS - start here

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Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.

There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.

https://patient.info/health/lichen-sclerosus-leaflet

Below are other useful websites:

http://www.lichensclerosus.net/ - Information to help manage LS

http://www.lichensclerosustreatment.com/ - webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain

http://caredownthere.com.au/ CareDownThere is written by a team of Australian Health Professionals with special expertise in treating vulval disease.

http://lichensclerosus.org/ The Association for Lichen Sclerosus and Vulval Health

Includes a page of Men only discussion - http://lichensclerosus.org/men-only-2/

http://www.bssvd.org/ British Society for the Study of Vulval Disease

This includes a "Find a clinic" service. The full list is here:http://www.bssvd.org/images/stories/documents/database%20of%20members%20of%20vulval%20service%20edited.pdf

Discussion on users' thoughts on causes of LS

https://patient.info/forums/discuss/causes-of-lichen-sclerosus--271583

Other discussion groups that may have relevant discussions to LS:

https://patient.info/forums/discuss/browse/alternative-and-complementary-medicine-3763

https://patient.info/forums/discuss/browse/autoimmune-disorders-3827

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  • Posted

    Hello. I was diagnosed with LS a month ago. This site has given me more information then I received at my gynecologist' s . I had never heard of this disease and when I first started looking at Google sites on this, That showed pictures made me so afraid and depressed. Coming to this

    Site has calmed me quite a lot. When diagnosed I was given a prescription for some strong cream and told to use it twice a day for 10 days. After the ten days I still had some symptoms. I continued to use the cream a few more days. When I looked at my self in the mirror the area between my bum and bits had turned white. Shocked me. I don't itch, and the pain is gone. At first the pain was bad. It is still all new to me. Thank

    You to all the ladies that have shared their stories, so helpful.

    • Posted

      Keep reading, Groky. You've come to the right place. There are lots of things you can do as well as use the prescription. It works very slowly, so try the other things. Hope to hear more from you!
    • Posted

      Hi Morrell, this truely is a great place to come when dealing with LS and the symptoms that come with it.  I tried a bath this morning with some baking soda and soaked  a bit. It felt wonderful.  I've been also trying A&D ointment a few days a week and that has helped calm things down.  Noticed that the white patch I had on my perrineum (forgive my spelling) is getting color back like it was before.  I didn't think that was possible.  Thank you again, and will be checking in on other discussions on this LS site as so many have such good suggestions.  It feels good not being alone in dealing with this that is for sure.
    • Posted

      It's such a wonderful two-way street here, isn't it. Glad you're seeing some results. It's all so variable and unpredictable.
    • Posted

      One thing I need to work on is not worrying about what will happen next with it. Last night I was overwhelmed and started to cry wondering when or if my clitoris was going to disappear

      altogether. Would my labia start fusing together. Had to talk myself down with the fact it's been diagnosed early and now this

      Site with so much great support and info. It's hard not to stress especially when stress can trigger things.

    • Posted

      Groky, I had it starting around age 22 and my clitoris only got totally covered over at age 62. At least that's my particualr slow-moving version of LS. Stress is a huge factor. I've always had psoriasis. You should see how my face went red and bumpy right during a first date. (Finished with that business, at least). I spent 12 years studying Buddhism and meditating. But sometimes we just lose it. I always get the little tear in my perineum a day or two after an upset. So, the best hing you can do is study some type of mindfulness practioce so you can stay on top of your negative thoughts before you become overwhelmed with emotion.

      And think of sugar the same way you'd think about sugar in your car's gas tank. Make a little go a long way and say no to the big servings.

       

    • Posted

      Good advice. Will work on mindfulness. A positive attitude

      Will help me in the long run with this. It's just a lot to deal with at first.

  • Posted

    I was diagnosed with LS 10 years ago. Just after my menses ended. I suspect I have had LS since I was a young girl and never had a proper diagnosis. In my twenties after 3 kids, at one internal pap exam I was asked if I had ever been injured on a bike. I didn't know what they were talking about and was sent to a Gynecologist for exam. Nothing ever came of it but back then I did suffer from Vitiligo and was given a sulphur base cream to clear up the itchy patches on my arm and shoulders. I married at 19 and always found intercourse a bit painful. For years I thought there was something wrong with me. I have had ipisiotomies with all my children and found healing from those not much fun. I always felt maybe painful intercourse had something to do with this and somehow these little snips had just made this area more sensitive to little tears and cracks.

    Now that I have researched to death, I realize I have always had LS. That no one ever understood it and that at 28 underwent a surgical procedure to fix a hooded clitoris unnecessarily as it was probably just disappearing from the LS. And my vulva that was very flattened was also the result and a bike injury had nothing to do with it. All those years with no diagnosis skirting around the disease and all those years of suffering and marital strife if only we had of known. My poor husband thinking I am avoiding him and me trying to get out of intercourse as much as I could for fear of pain. All unnecessary. 

    Today I see there is a link with thyroid as I have hypothyroidism. A link to Vitiligo, a link to autoimmune. I now do believe there is oxidative damage to lipids and protien enzymes in our bodies and the cure has to be found in these areas. Studies reveal Enzymatic Antioxidant defence in LS is disturbed. Here lies the key. I have read so much on this. Using Antioxidants may be the way to go in the future and would love to know if anyone has tried going this route for healing.

    i am using Clobetasol propionate 0.05% and alternating with estrogen cream for flare ups and baking soda, epsom salt sitz baths, coconut oil, Emu Oil and Vaseline in between, but it's just a vicious cycle that keeps recurring year after year if you don't stay on top of it. I hope somewhere through all these exchanges something safe and healing can be found. If am so happy to have found this group. I read every single word.

    • Posted

      Dear Bergsca, thanks for posting. You already know then, how similar our histories are. You sound so thorough and sensible I'm going to take this antioxidant idea to heart. Always good to have something that helps us feel we have some control.
    • Posted

      I've done some googling on Enzymatic Antioxidant defence in LS. Looks like the lycopene in Tomatoes helps. Not lycopene supplements but actual tomatoes with their complex suite of nutrients that may help the lycopene work. I stopped eating my homemade cabbage soup about three years ago, but I'm starting again. I put a small can of tomato paste in a big pot of soup. I ate it every day for lunch for quite a few years.
    • Posted

      Wow, I'm reading more about lycopene. I had this awesome vegetarian diet (so well thought-out that my then partner talked me into making a web site about it: PM me and I'll send you a link). It was full of tomatoes, red & pinto beans, red cabbage, I'm looking at high lycopene foods and realizing that when my current (soon-to-be-ex) partner moved in I had to completely give up that diet to please his taste buds. And that was when my LS got a lot worse.
    • Posted

      Oh Morrell, thank you for all this info. Now I don't feel like an idiot with a bag full of info no one talks about. I eat homemade soup every single day with tomatoe, cabbage, carrots and onions. I switch it up with leeks ones time or beans next time, black or white but always always add  a can of crushed tomatoes or crush my own. But yes, there is a true link. I have had LS since I was a young girl. I know that now that I can look back and see myself all along the way. I also had a child at 15 I had to give up for adoption. I was very young and tiny. I think I weighed 98 when I got pregnant and was 122 full term. So I always thought maybe that all that stretching down there so young plus they had to snip me down there to get her out may have started the stress in that area but because I was producing so much estrogen as a young girl never really had the full effects of LS until I hit menopause. I don't ever think I had a minor labia. I realize now I never did look like anyone else down there but I would never of known that as I never went around looking at other women down there. But seeing pictures as I got older I knew. Always had that tight shiny skin. When I was asked if I had a boy bike injury by my Gyno they should of known right then I had LS, and if I had of had treatment in my teens and 20's to keep it moisturizer etc it may never have gotten to here. It makes me so angry but more so sad at how it ruined a young girls relationship with her husband. We had 3 more kids but I avoided sex like the plague when I could and he always felt it was HIM I was avoiding, but it was the pain and we would sometimes get in arguments because we were young and immature. Now we have celebrated our 40th wedding anniversary and have a loving relationship because WE know what's going on. I am so lucky to have him in my life. He says we've had enough sex to last a lifetime and now it's time for a new phase. He is the father of that little girl long ago by the way, and she found us a few years ago so we have 3 more grandchildren we never knew we had, so lots to,live for. Life can be all about sex sometimes, but then when it's gone you realize just how much it's not!!! We had some great times and I is those times, but new times are ahead. I hope your tomatoes help you because even though I've had this for 40 years or more I am not that bad. It has to be what I have been eating all these years. Lots of veggies, salads fruits, but meat and dairy too...not just a ton of those. I eat everything and drink everything. I think it's how much of it I consume is the key. Small amounts of everything but large amounts of the garden stuff. What do you think? Right now it's a bit bad because I was on antibiotics for strep and then I always get it bad after. Do you think probiotics to replace the PH in the vagina would help that. Is eating yogurt the same? They say dairy is bad. Do you think it is?
    • Posted

      I eat like you and I also believe my LS is farily mild after 40 years because I've always eaten sensibly – and also because I've had a few long periods of celibacy. I eat yogurt every day. I make it with locally produced full-fat organic milk and powdered starter from a cheese supply place. It's thick and creamy and I believe it mostly keeps the yeast in check – yeast and LS are devillish together.

      You're very fortunate to have found your one man so young and grown together.

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